I started writing a blog last night, but got interrupted with family things and never finished. It started out saying something like "things have been quiet. No illnesses, no doctor visits, no hospital stays, no news....
That still mostly holds still today, but perhaps my outlook has changed on it.
We have had some concerns over Evans hips for a while now and at the last Spinal Defects clinic we talked to the orthopedic Physician Assistant who sees us there. She agrees that we may need to do something about them. Both of his hips have been dislocated since birth and the general consensus is that if they are symmetrical (both out) you leave them alone. The problem now is that the muscles on one of the hips is very tight and one is very loose. The PA had us schedule an appointment with the doctor. I called that afternoon and got her next available appointment...six weeks later, which was for this Friday, July 15. Today, July 13, I got a call that our doctor is actually going to be out of the office on Friday, but they could get us in at her next available opening, on Friday, August 12th. I was not happy and expressed my discontentment to them.
Early August is already a very full two weeks for us with appointments. On August 3rd we are scheduled to see our new GI, since our other one moved out of state. August 8th we are having a repeat swallow study. I have been trying to control my anxiety about the swallow study, since the one we did in January went so badly. I am hoping we get some better answers this time so that we can begin moving forward with getting Evan to advance with his eating and drinking. Then the next day, August 9th, Evan is having his first official head and spine MRI which will require sedation. And now we get to finish the week with an ortho visit to talk about possible hip surgery.
I realize in the big scheme of things, maybe all of this is not such a big deal, but in some ways it is. I hate that I have to constantly ask for time off work for appointments. I am lucky enough to work with people who are very understanding, but I still feel badly. I try, when I can to spread appointments out, to not have such a noticeable absence, but this time it couldn't be avoided. All of these appointments were difficult to schedule and were scheduled many weeks and some, months ago.
So after getting off the phone with the Orthopedic office, I was feeling upset and frustrated. It saddens me that there are so many children out there that need to see these specialist that it takes so long to get an appointment. It frustrates me that...we have to deal with any of this. Some days I get angry at Spina Bifida, and today, ok, really this week is one of them.
I want simplicity. I want a break. I want a moment to have a pity party.
It does make it easier that he is pretty cute...